HFA hepatitis C strategy

HFA continues to implement its national hepatitis C strategy. This strategy was developed out of steps to understand the needs of the bleeding disorders community affected by hepatitis C, to develop a plan to meet these needs and put the plan into action.

WHY THE NEED?

In Australia many people with bleeding disorders acquired hepatitis C from their plasma-derived clotting factor treatment products before 1993.

Several safety measures were introduced by 1993 and the risk of bloodborne viruses from plasma-derived clotting factor products in Australia is now considered to be extremely low:

Community survey on hep C experience as evidence for Government Inquiry

2014

Feedback on draft National Hepatitis C and HIV strategies

2013

Submissions to the Australian Government/PBAC on access to triple therapy hepatitis C treatments

2010-

Further community consultation relating to financial issues.
Meetings and correspondence with Australian governments on no-fault financial assistance scheme for people with bleeding disorders and hepatitis C and issues relating to out-of-pocket health care costs.

ELIMINATING HEPATITIS C IN THE BLEEDING DISORDERS COMMUNITY

In the HFA hepatitis C needs assessment the main priority for people with bleeding disorders and hepatitis C was to cure their hepatitis C.

Revolutionary new hepatitis C treatments with very high cure rates, few if any side-effects and shorter treatment courses came to market internationally in 2014. HFA joined the national campaign to have universal access to these treatments through the Pharmaceutical Benefits Scheme (PBS), with a specific goal of eliminating hepatitis C in the Australian bleeding disorders community. The first of the new treatments were listed on the PBS in March 2016, with a range of treatments now available. Haemophilia Treatment Centres have reported to HFA is that nearly all of their patients with bleeding disorders and hepatitis C now been treated and cured. HFA is now concentrating on work to ensure all people with bleeding disorders and hepatitis C have the opportunity for hepatitis C treatment, particularly:

Those with barriers preventing them from accessing treatment

Those with mild haemophilia or von Willebrand disease or rare clotting factor deficiencies, including women, who may have had few clotting factor treatments before 1993 and be unaware of their hepatitis C risk or status.

To raise awareness of hepatitis C in people with bleeding disorders among general practitioners, who may see both of the above groups in their practice, HFA collaborated with the Australian Haemophilia Centre Directors' Organisation and hepatitis experts to develop:

HFA continues to promote this fact sheet as many people with mild conditions do not attend a Haemophilia Treatment Centre regularly, if at all, and may not have been reviewed or tested for hepatitis C virus.

Needs assessment

The groundwork for understanding the situation for Australians with bleeding disorders and hepatitis C was laid with the HFA hepatitis C member survey in 2003. Results from this survey were used as evidence for the Senate Inquiry into Hepatitis C and the Blood Supply in 2004. A summary of the survey results was published in the HFA Double Whammy Report.

Needs of the person with a bleeding disorder who has hepatitis C, or has had hepatitis C and cleared the virus, can be quite individual and can vary in different parts of Australia. To get a better sense of the range of people’s needs, HFA followed up the survey with a comprehensive needs assessment. This involved discussions with many different people and organisations:

Haemophilia Foundations around Australia

Focus groups in several states/territories with people with bleeding disorders affected by hepatitis C and their partners or family

Partnerships

HFA works collaboratively with its member Haemophilia Foundations, with the Haemophilia Centres around Australia and with Australian and state/territory hepatitis organisations to achieve common goals for the bleeding disorders community affected by hepatitis C.